Understanding inequalities in cancer screening in the learning disability and autism populations of the Northern Isles

Abstract

Background: Cancer screening programmes reduce the incidence of, and mortality from, cancer through early detection and intervention at a population level. People with learning disabilities and/or autism throughout the UK face considerable inequalities in cancer screening, and the Scottish Government have pledged to improve access to screening services for these populations. Research naturally focuses on the more urban populations which does not necessarily apply or translate to Scotland’s vast remote and rural geography. The Northern Isles of Orkney and Shetland are on the periphery and provide unique challenges to population based interventions and healthcare research. This thesis aims to better understand inequalities of access to cancer screening programmes for the learning disabled and autistic populations in Orkney and Shetland. Methods: A clinical audit was conducted on available GP Practice data for cancer screening and HPV immunisation in the learning disability and autism populations of Orkney and Shetland. This was followed by a qualitative exploration of stakeholders’ views on and experiences of cancer screening for people with learning disabilities and/or autism. Interviews and focus groups were analysed to develop themes using Reflexive Thematic Analysis. Results: Rates of screening uptake are comparable to available data on the learning disabilities populations elsewhere in Scotland but serve to highlight a greater disparity in Orkney and Shetland, given the relatively high uptake of screening in their respective general populations. Participants described high-level structural barriers to screening, including screening systems and processes, uncertainty around responsibilities and decision-making, and how cancer and cancer screening is viewed in the community. Small communities were seen as a unique strength but were also felt to be a factor in perpetuating unhelpful myths and stereotypes. Conclusion: Targeted efforts are essential to redress these inequities, for which we now have evidence-based recommendations and a co-production plan.